Rich injured his leg riding his bike in September of 2017. He went to physical therapy for a while and things improved. Over time, his limp returned and began to worsen. This led him back to PT for answers.  PT recommended seeing an orthopedist. Quickly, they urged him to see a neurologist. This was sometime around November, 2018- right around Rich's 28th birthday.  We tried getting appointments with neurology but they were booking out months in advance.  Meanwhile, his left hand began to show weakness and he experienced muscle twitches throughout his body.  The hand weakness was most noticed when he was unclipping our son’s highchair, who at the time was around 15 months old.  At this time I felt so much uncertainty and fear for our family, we had just purchased our new home and I was newly pregnant (about 4 months) with our daughter. I knew something wasn’t right, but I never imagined ALS, at worst, I thought it was MS or a brain tumor.  Having these thoughts was absolutely terrifying. Rich met with a neurosurgeon (thanks to my sister) at Lahey on December 18th, 2018. This was followed by an MRI of his brain and spine. The MRI came back clear- so the neurosurgeon was unable to help us further. At this time I felt relief… ahhhh… no surgery… no cancer… no chemo… maybe it’s nothing at all… Then came the neurologists, two neurologists to be exact.  They assessed Rich and were very concerned. At this point, we still had NO IDEA what they might be looking for.  We gathered with our families for our annual holiday traditions and enjoyed all of the laughs and fun of the season, despite the unknowns that were ahead of us.  Looking back at photos from this time, there is a lot of joy captured, and that, I am grateful for. [...]

Back in November 2019, a company called Living in the Light was contracted by the Muscular Dystrophy Association to interview patients with rare diseases. They reached out and asked if we would be willing to participate. This included a family photoshoot and an interview. We agreed. The day before Thanksgiving, as we were prepping to host family for our second year in a row, we answered their questions and had a fun photoshoot in our home and in the backyard. We prepped food and cleaned the house while Jeff (writer) and Epli (photographer) spent the day with us. When it came time for a more formal interview, my parents came and helped out with the kids.  Here is the link to the article written about us.  It is weird to read about our life in this way, it is hard to believe it is real, but it is so very real. Jeff, the writer was so kind and genuine through the whole process, he traveled from Arizona to meet us.  The pictures captured are full of our pure joy and love, despite the sadness that may come through in the story. Epli, our photographer was absolutely incredible, they traveled all the way from California for this.  The work Living in the Light does is truly special.  They recently started the I Stay Home for Rare campaign and are raising money for those living with rare diseases who have been affected my COVID-19. Check out their site here.[...]

Amyotrophic lateral sclerosis (ALS) is a disease of the motor neurons, the neurons that connect the brain to the movements of the body. These neurons begin to die, causing the muscles to lose their signals. No signal means no movement, no movement means muscle wasting. In ALS they must see degeneration (loss) in upper motor neurons (UMN) as well as in the lower motor neurons (LMN). UMN’s are in charge of controlling the big (gross) and small (fine) muscle movements of the limbs, while LMN’s control the muscles in the face, movements of the eyes, chewing, swallowing and speech.  An electromyography (EMG) is used to assess the motor neurons and based on the results could lead to an ALS diagnosis, so long as all other diseases of the motor neurons are ruled out. Rich has UMN predominant ALS, meaning that it is most strongly affecting his mobility and fine motor skills at this time. I am watching it begin to effect the LMN areas, but thankfully those have stayed pretty steady.  There is no known cause for ALS, other than the 5-10% of people who have specific familial gene mutations. Rich does not have any of these gene mutations. Through research we have our own ideas about cause, more on that later.[...]

Welcome to Leah's updates and support page.  Here I plan to write stories about our past, present and future in our battle with Amyotrophic Lateral Sclerosis (ALS).  I hope this space becomes a place that people can leave supportive comments, share resources, share stories and most importantly share love. This is an outlet for me and a way I can share our journey with loved ones and those who have been and will be supporting us on our journey.  If you learn anything from this page, I hope you learn to live life one day at a time.  [...]